Musings on Mesothelioma

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“Umm, I’m having a bad trip. I ate part of a pot cookie.” Dear God the humiliation. The nurse lowered her head and squinted at me over her glasses. “And I have cancer!” I blurted out.

“Please take a seat over there,” she said pointing.

I sat down in the waiting room, which on a Friday night was hopping like a club. My dad, who had accompanied me, took a seat next to me. If I remember correctly I think he was reading The New Yorker, which he’d brought with him from home.

Feeling paranoid from the weed, I decided I needed to “lay low,” so I slithered down in my chair, the lowest I could go. My dad peered down at me out of the corner of his eyes; no doubt he was counting the minutes until my partner arrived to take over babysitting. I tried sneaking a peak at the others sitting around me; they looked like a pretty rough crowd.

“Dear God, Goddess and Universe: I’m having a bad trip and I’m surrounded by sketchiness. Can you please help? Thank you.”

My partner arrived, greeting my dad as if nothing the least bit strange was transpiring. My dad wished me luck – like I was about to write an exam – then left. Soon after I was sitting with my partner at a nurse’s desk as she took my vitals. I explained that I had been eating the cookie, (baked by a well-meaning friend), in an effort to soothe my anxiety enough so that I could eat a proper dinner. Since my recent cancer diagnosis I was having great difficulty eating and had already lost seven pounds.

“I had one bite and it tasted awful, like poison. But nothing happened so I took another bite.” The nurse looked at me, as if to say, “don’t you know anything?”

“Then I was in the bathroom for a long time, re-arranging things and looking at my pores.” I’m pretty sure the nurse was silently judging me at this point.

I continued, “and I felt good, but then I started freaking out…” I trailed off.

As if by magic, I was suddenly presented with a cardboard bowl and I barfed up some banana. I tried throwing up daintily – I mean despite this horror I was still a lady.

The decision was made that I would “ride out my bad trip,” on a stretcher in the waiting room, positioned a bit off to the side. I lay down feeling at once very safe and very exposed. I babbled to my partner, clutching him at times as if I were in grave danger.

“Am I seeing what I think I’m seeing?” I asked him. The waiting room had suddenly become an episode of Law & Order, with two belligerent women handcuffed to their respective stretchers; police officers standing nearby. I wondered if the women were high on drugs too. “My God,” I lamented to myself, “look at the depths to which I’ve sunk. I’m on drugs and hanging out with criminals.”

Several hours later, no longer tripping and back at home cuddled up with my dog Leroy, I reflected on one of life’s most important rules:

When eating edibles, especially homemade edibles, refrain from acting like The Cookie Monster.

Take one bite and wait. Check your pores, re-arrange stuff, do whatever you want, but do NOT take a second bite right away.

“Let’s have you pee in a bed pan today!” My nurse exclaimed with an air of excitement, like we were about to go see our favorite band.

I had been in the hospital for almost four weeks, (to treat Peritoneal Mesothelioma, a rare cancer), peeing through a catheter the entire time. I was game to try going on my own, but I was weak and wasn’t sure I would have the strength to pull myself up on the bed. My nurse took out my catheter then helped me into an awkward position, crouched above a cardboard pan.

The pan looked like a larger version of those biodegradable herb containers; my vagina an alien spacecraft hovering above a brown pebbled earth.

“I’ll give you some privacy,” said my nurse, leaving the room.

I looked out the window at the falling snow. No urine was exiting my body. “I command you to pee!” I said in a theatrical voice to an empty room. Nada. Not a drop. I was sweating and wanted to lie down, the position required too much strength to hold.

The succulent-crystal gurus say, “Ask The Universe – with love and gratitude – for what you need. Then visualize having what you need – and poof! – you will manifest it.” So I asked the universe to help me pee, in what I hoped was a loving and grateful manner. Then I visualized a long river-like flow of urine exiting my body – swoosh! I paused, ears tilted, in full manifestation mode. Nothing. Maybe the universe was busy helping people with more serious problems, like those living in camps in war torn countries. I couldn’t blame the universe, I’d do the same thing if I had magical powers & everyone was hounding me for help.

I was sure I was due for another blast of Hydromorphone. After two surgeries and HIPEC, (hot chemo poured in the abdomen and swished around), I was ablaze with pain. I buzzed the nurse’s station:

“Hi. I can’t pee. Nothing is coming out. Also, I think I’m due for more painkillers.” My nurse responded, “be patient, keep trying, it’ll come. And no, you’re not due for more pain meds yet.”

I stared gloomily at my crotch. “I know you’re in there, come out come out wherever you are!” Still nothing. I tried reaching for my water cup and fell into the pan.

My nurse appeared, “don’t worry sweetie, your bladder is just waking up from a long sleep, we’ll try again tomorrow.”

She helped me lie down and inserted a new catheter. I asked her about her plans for the next couple of days since I knew she was off. “I’m heading over to Buffalo with my sister to hit the holiday sales at Macy’s.” “That sounds like fun!” I said enthusiastically. I loved my nurse, I loved all of my nurses – they were like athletic shoe-wearing angels tending to me with care and quiet confidence.

“I’ll see about your pain meds” she said, as she handed me a damp towel for my sweating brow.

After five weeks in the hospital – and no peeing on my own – I was transferred to a Rehab Hospital to work on regaining strength, gaining weight and learning to walk again. My left femoral nerve had conked out during surgery, (from being splayed out for so long on the operating table) and I had awoken to find that I couldn’t move my leg.

So, let’s recap: I couldn’t pee, I couldn’t poop – (waste was now coming out of my stomach into a bag, since my surgery had also included the bonus gift of an ileostomy) and I had a bum leg. For the love of God and all that is Holy, throw me a bone, any bone. This is too much.

The nurses at the rehab hospital were hardcore, they were like the Marine Corp of Nurses. They immediately took out my catheter and started “bladder training.” They seemed confident that I would be peeing in no time. I was instructed to try peeing on my own every two hours, so I would shuffle over to the bathroom using my walker, trying my best to avoid looking at myself in the mirror so as not to further depress myself. Sitting on the toilet with the sink water running, I would wait five minutes, then get up and do my haunted girl shuffle back to bed.

Bladder training required waiting six hours before being allowed to have a catheter inserted to void the urine. In between physiotherapy, sleeping and doing my laps around the floor, my bladder would fill up to the brim; it was horrible. At this point I was no longer on pain meds, but I would often sneak a Xanax from my private stash just so that I didn’t completely lose it.

The nurses were required to scan my bladder to see how much urine I was retaining before they were allowed to insert a catheter to drain me. A catheter, in this case a long rubbery one which looked like a hose, was lubed up then inserted into my urethra. The urine would then drain out into the brown organic pan, they called it doing an “in and out.”

Though the Marine Corp nurses were amazing, there was one whom I always dreaded having. She acted like it was my fault that I wasn’t peeing and she gave me major attitude over having to do in and outs. Instead of properly sterilizing my urethra, she would literally throw sterilized water from a far distance over my entire vaginal area. Then she would leave the room to go searching for a flashlight. Often she would attempt to put the catheter in, but instead she would jam it up the wrong hole. When she finished she would “tsk tsk” me under her breath. I knew this part of her job was a major drag, but what could I do? The universe was busy helping others and my bladder nerves had gone into hibernation.

At this point my cancer wasn’t even my main concern. All I could think about was the fact that I was a skeleton with thinning hair who couldn’t pee, poop or walk. Were it not for the support of my amazing partner, family & friends, I would surely have fallen into a pit of despair.

Then came the day when one of my favorite nurses dropped a bomb: “you’ll be going home very soon and your bladder nerves are still not working. So today I’m going to start teaching you how to do your own in and outs.” Dear God, have mercy on me please.

Thus began a brief chapter in my life called “Finding Urethra.” Because if you want to drain your urine, you first need to find the hole that it comes out of. And by hole, I mean a really tiny, almost imperceptible slit that is kind of hidden by the rest of the female bits. Maybe I’m in the minority or I missed a crucial health class back in high school, but I honestly didn’t really understand where the urethra was. So I used a mirror to watch the nurse and at night, under my blankets, I examined myself by the light of my cellphone.

I had an irrational fear of doing the procedure on my own. It’s like all my anxiety about having cancer was projected onto this one procedure and I couldn’t imagine that I would ever master the skill. I envisioned myself at home, swollen like a balloon with unreleased urine, until one day I just exploded, spraying pee everywhere.

But like anything in life, when your back is against the wall and you have no other options, you figure things out. One day, having finally located my elusive urethra, I successfully performed my own in and out! I basked in the glory of the moment, telling everyone on my floor my good news. I celebrated by eating an extra cup of ice cream (side note: the little hospital ice cream cups are, unlike all other hospital food, strangely delicious).

A few days later I was discharged from the hospital with a supply of tiny, clear catheters, lube, a giant splint on my leg, a walker, crutches and a cane. It would be six more months until my bladder woke up. Then, one day, while sitting on the toilet, I suddenly heard a beautiful noise – the swoosh of urine! The universe had finally granted me my wish.

Author’s Note:
My bladder nerves only partially woke up; I still have to self-catheterize twice a day. This is what the little catheters, aka, pee sticks, look like:

It was my first time trying on skinny jeans and I was excited. My legs are stocky, inherited from my mom’s side of the family who were all strong Irish farmers. As a teenager I had yearned for my dad’s long, pole-style legs and had even asked my parents if I could get my legs stretched (I had read somewhere that a lengthening machine existed).

At forty-six years old I had long ago accepted by body, but when I slipped into a pair of size 24 skinny jeans and saw my legs looking strangely slim, suddenly my insecure teenage self reappeared and she was ecstatic. Yet the reason they looked slender was because I had lost weight due to cancer. I was newly diagnosed with Peritoneal Mesothelioma, a rare, incurable form of abdominal cancer and I was in denial. “I’ll take them,” I told the shopgirl. And though I’m ashamed to admit it, for the next few weeks I actually liked how I looked. How sick is that? Speaking of sick, during this same period I did not feel well: I had difficulty eating, major nausea and twice daily panic attacks where I felt like my throat was closing.

My cancer “de-bulking” surgery was eight hours long and included the removal of my reproductive organs, a section of my small intestine and my primary tumour which I had named Maude. It also included a treatment called HIPEC, which is essentially hot chemotherapy poured directly into the abdomen while the patient is still on the operating table, aka a chemo bath.

After several days in the ICU, I was moved to the step-down unit. It was there, ablaze with pain and high on narcotics, that I made a decision: I had suffered enough. I would run away from the hospital and fly to Oregon where I had read they had passed legislation that allowed patients to “die with dignity.” But such an escape would be impossible without my skinny jeans.

“I need my clothes,” I whispered in a raspy voice to my partner. Not wanting to upset me, but suspicious of my intentions, he retrieved my hospital bag and put it next to me on the bed. I pawed at it in a drugged-out frenzy, then passed out.

I awoke to a large tiger staring at me from across the room. And someone had brought their dog to work: “I can’t believe they let animals in the hospital!” I said to myself, horrified. My great escape would have to wait, the hospital needed me; I had to keep watch over the creatures infiltrating the building.

Also, I had a new friend whom I had become very attached to and I didn’t want to leave her. A nurse’s assistant had been placed in my room to guard me, since in my delusional state I had made several attempts to get out of bed (while attached to multiple tubes and monitors). Not understanding that she was there to keep an eye on my crazy self, I thought I had my own private nurse-friend and I adored her.

Due to a myriad of complications, I spent two months in two different hospitals. At the second one, a rehab hospital, the nurse weighed me: the scale read 94 pounds, I usually weigh 120. I had lost a great deal of muscle mass; my legs were emaciated, atrophied sticks and my bum was pancake-flat. I avoided looking at myself in the mirror, it was too upsetting. I begged God to help me gain back the weight, promising never to complain about my thick legs again.

In retrospect I think my early fixation on my legs was simply my way of avoiding the intense emotions that were surfacing. I was scared of dying, who wouldn’t be? But what really troubled me was the idea of hurting those I loved. I was blessed with a partner, family, friends and a one-eyed elderly street dog who all loved me. I didn’t want to cause them pain.

Now, two and a half years later, I am back up to 120 pounds and I’m as stocky as ever. I am extremely lucky to be alive, many people with Mesothelioma don’t live more than a year after diagnosis. And though I’m grateful, I’m also aware that I’m living on borrowed time. So now I wear skinny jeans as often as possible. It’s my way of giving cancer the middle finger.

The famous skinny jeans try-on at ShopGirls on Queen West in Toronto. I had already lost ten pounds here and little did I know that I would lose 20 more…

After my surgery and heated chemotherapy (HIPEC), I spent two months in the hospital. At one point my room looked like a funeral parlor, there were about twenty floral arrangements. Now I love flowers and I love receiving them and I was/am hugely grateful for the kind gestures of my friends and family. But we need to mix it up a little, too many flowers can make a patient feel like a priest is about to walk through the door to administer their last rites. So what to buy your loved one instead? I recommend “Dammit Dolls.” They are bright, joyful, nutty little creatures that you can bang against your hospital bed when you get frustrated waiting for your morphine. There are many to choose from, one is even especially designed for cancer patients, with half the proceeds going towards fighting childhood cancer:

When I was diagnosed with Peritoneal Mesothelioma, a rare, incurable cancer, many people didn’t know what to say to me. I don’t blame them at all, I wouldn’t have known what to say to me either. Enter the brilliant Emily McDowell and her fantastic line of Empathy Greeting Cards. Emily has created cards for those many awkward moments in life when we just don’t know what to say. Whether your friend is struggling with cancer, infertility, or the death of a beloved pet, Emily’s cards are perfect. They are humorous and heartfelt and many of them poke fun at the ways in which we try to say the right thing but fail miserably. As a cancer survivor, Emily knows first hand what it’s like to have friends say cringe-worthy things like, “none of us know when we’re going to die, I could get hit by a bus tomorrow!” So let Emily’s cards do the talking for you and bring a smile to your loved one’s face.

If ever there was the perfect concert to have your ostomy bag leak during, it would be at a Flaming Lips performance. Picture lots of glitter, color, sparkle, inflatable creatures and a lead singer wearing rainbow wings while riding a lit-up unicorn. Part psychedelic rock, part theatre, part performance art, The Flaming Lips don’t put on a typical show.

Among a sea of mostly twenty-eight year olds, many of whom were dressed in colorful costumes and probably high, (no judgement, it’s the perfect concert to be high at!), stood my partner and I, both 49 years old. We fit in just fine. I was dressed in black skinny jeans, Adidas, a colorful long tunic and sparkly necklace. The problem was, instead of eating magic mushrooms or smoking a joint before the show, I had decided to pound back an entire, GIANT grapefruit. Now, keep in mind that I have an ileostomy: the lower part of my small intestine – the ileum – has been surgically brought out through an opening in my abdominal wall (the opening is called a stoma). Visually, it kind of looks like I have a strawberry sitting on my tummy. Ron, as I like to call my ileum/stoma, spews out everything I eat into a bag. Usually food exits my body in liquid form and it is fairly simple to empty the bag into the toilet throughout the day. But, certain foods like grapefruits, get digested differently and they exit my body in a much thicker fashion. So, essentially I had a hideous traffic jam of very thick grapefruit trying to exit my ileum and make it down to the safety of my bag.

Fast forward to me touching my bag – I always check it a million times when I’m out of the house – and feeling wetness! My worse nightmare had come true – a bag leak in public! Sweet Jesus! Thankfully I always carry supplies with me wherever I go, so I made a mad dash to the ladies room. The bathroom had speakers so I was able to listen to the show as I struggled with my bag explosion. In the stall next to me was a young woman wearing a unicorn headband. She was in her stall for almost as long I was in my mine. I’m not sure what she was doing, but I’m pretty sure she was having more fun than I was.

The bag clips on to a sticky thing called a “flange,” which is what encircles my ileum. After doing a bag change I always lie down and apply light pressure with my hand to the flange and bag: the warmth of my hand helps to properly affix the flange to my skin. So I decided to half sit, half lie on one of the chairs in the lounge section of the bathroom – LOL. I watched as 28 year olds wearing faux ripped jeans, applied massive amounts of eyeliner and lip gloss. They looked so fresh and shiny and beautiful and for a moment I felt like crying out of envy. I’m sure I looked like a total weirdo, half lying on a chair, holding my mid-section. But thankfully no one bothered to ask why I was splayed out so strangely – they probably just thought I was tripping hard on psychedelics. So again, it was the perfect concert to be at.

We had to leave a little early because my tunic was wet and I was exhausted from the emotional drama of the experience. But before going I was lucky enough to see their lead singer Wayne Coyne, perform David Bowie’s song “Space Oddity,” while surfing the crowd in his giant clear ball. So thank you Flaming Lips for helping me to survive my first public bag leak. #unicornsandgrapefruits

Lately there has been a lot of talk about Gratitude, especially on Instagram. According to the eight million lifestyle gurus out there – who all seem to live surrounded by succulents, crystals and those white, fluffy IKEA bear rugs/throws – if we begin each day with our hearts full of gratitude, good things will come our way. Can we just please stop with this faux-spiritual crap? It’s enough already. Being grateful for what you have: loving friends, a roof over your head, food on the table, good health, a job – is hugely important. Those who are not grateful are basically just assholes. But the idea that gratitude is somehow an elixir that will allow light, beauty and positive experiences into our lives is a lie. The problem is that the truth just doesn’t sound as good, it’s not as hashtagable. The truth is that you can start your day full of gratitude – for your life and for everyone and everything in it – AND tremendously shitty things will still happen to you and your loved ones.

Don’t get me wrong, I love the idea of gratitude as a magical potion. It is vaguely comforting, like drinking a glass of wine while swaddled in a velour blanket. And, full disclosure, I own three crystals – I bought them at one of those Witchy Woman type stores, the kind that offer workshops on making your own moon juice. I bought the crystals because I thought they were pretty to look at, although I tried to tell myself that I was buying them for their healing properties. They sit next to my succulents, which are the only plants I can seem to keep alive. But as someone with cancer, I find the whole Gratitude Movement annoying and kind of insulting. The truth is that no matter how much gratitude you bathe yourself in, life is completely random, some of it is just plain horrible and much of it is out of our control. Yet, in many ways this truth is magical. Because in all of its harshness it quickly simplifies things. The shades of grey disappear and POUF! life becomes more starkly black and white – it can be freeing. You become a better editor of your life. For me, these editor conversations sound something like this:

Do I want to spend my evening with a woman who will only talk about herself for three hours? No, no I don’t.

Do I want to go to a party when I’m not feeling well just because I’m expected to go? Nope.

Do I want to make sure that my partner and I travel somewhere wonderful this summer while I am still healthy-ish? Hell yes!

That said, I think we should all use whatever tools and whatever bag of tricks we have to help us move through life with as much ease as possible. And I definitely think that gratitude is essential. Also, it’s entirely possible that I’m just envious of all those who truly believe in the Gratitude-Crystals-Succulents-IKEA Bear Rug/Throw Religion. I think I secretly want to be one of them. But I just can’t. I like the look, I like the idea of it, but I just don’t buy it. #butistillwantoneofthoseIKEAbearrugs